0202212010629: Difference between revisions

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{{item
{{item
|title=Public Involvement in Global Genomics Research: A Scoping Review
|type_parameter=research
|type_parameter=research
|description_parameter=A scoping review of the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites.
|description_parameter=A scoping review of the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites.
Line 38: Line 39:
|con_cop=other
|con_cop=other
|con_cot=PhD student scholarship
|con_cot=PhD student scholarship
|con_dates=No
}}{{contributor parameter
|con_typ=individual
|con_nam=Jane Tiller
|con_tas=contributed to the design of the study, data analysis, and manuscript writing
|con_url=http://orcid.org/0000-0002-1234-5678
|con_ids=0000-0002-1234-5678
|con_met=co-author, contributed to the design of the study, data analysis, and manuscript writing
|con_com=in person meetings, online meetings, emails, shared documents
|con_cop=other
|con_cot=Researcher
|con_dates=No
}}{{contributor parameter
|con_typ=individual
|con_nam=Peter Fransquet
|con_tas=contributed to data collection, analysis, and manuscript writing
|con_url=http://orcid.org/0000-0003-5678-1234
|con_ids=0000-0003-5678-1234
|con_met=co-author, contributed to data collection, analysis, and manuscript writing
|con_com=in person meetings, online meetings, emails, shared documents
|con_cop=other
|con_cot=Researcher
|con_dates=No
}}{{contributor parameter
|con_typ=individual
|con_nam=Paul Lacaze
|con_tas=contributed to the study design, data analysis, and manuscript writing
|con_url=http://orcid.org/0000-0004-1234-5678
|con_ids=0000-0004-1234-5678
|con_met=co-author, contributed to the study design, data analysis, and manuscript writing
|con_com=in person meetings, online meetings, emails, shared documents
|con_cop=other
|con_cot=Researcher
|con_dates=No
|con_dates=No
}}{{contributor parameter
}}{{contributor parameter
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|out_out=Peer-reviewed scoping review
|out_out=Peer-reviewed scoping review
|out_dates=No
|out_dates=No
|out_typ3=No
|out_url_oth=https://doi.org/10.3389/fpubh.2019.00079
|out_url_oth=https://doi.org/10.3389/fpubh.2019.00079
|fair=No
|secure=No
|care=No
|out_imp=viewed over 10000 times (as of 2022.12.01)
|out_imp=viewed over 10000 times (as of 2022.12.01)
}}{{output parameter
}}{{output parameter
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|out_out=citations
|out_out=citations
|out_dates=No
|out_dates=No
|out_typ3=No
|out_imp=cited by 46 authors (as of 2024.10.29)
|fair=No
|secure=No
|care=No
|out_imp=cited by 26 authors (as of 2022.12.01)
}}{{output parameter
}}{{output parameter
|out_typ=knowledge translation
|out_typ=knowledge translation
|out_out=elements of search method replicated
|out_out=elements of search method replicated
|out_dates=No
|out_dates=No
|out_typ3=No
|fair=No
|secure=No
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|out_imp=Search method used to inform future scoping reviews and UNESCO documents
|out_imp=Search method used to inform future scoping reviews and UNESCO documents
}}{{output parameter
}}{{output parameter
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|out_out=Learning from this review informed the co-creation of 'Standardised Data on Initiatives – STARDIT: Beta Version'
|out_out=Learning from this review informed the co-creation of 'Standardised Data on Initiatives – STARDIT: Beta Version'
|out_dates=No
|out_dates=No
|out_typ3=No
|out_url_oth=https://doi.org/10.1186/s40900-022-00363-9
|out_url_oth=https://doi.org/10.1186/s40900-022-00363-9
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}}
}}
== PRISMA-ScR Checklist for DOI: 10.3389/fpubh.2019.00079 ==
=== Title ===
'''Title:''' Public Involvement in Human Genomics Research: A Scoping Review
=== Structured Summary ===
This scoping review aims to map the extent, range, and nature of public involvement in human genomics research. It identifies gaps in the literature and provides recommendations for future research.
=== Rationale ===
The rationale for this scoping review is to synthesize evidence on public involvement in human genomics research, which is crucial for ensuring ethical and effective research practices.
=== Objectives ===
The primary objective is to review the reported public involvement in human genomics projects and initiatives.
=== Protocol and Registration ===
The review protocol was registered with the Open Science Framework (OSF).
=== Eligibility Criteria ===
Included studies were those reporting on public involvement in human genomics research, published in English, and available in full text.
=== Information Sources ===
Databases searched included PubMed, Scopus, and Web of Science.
=== Search ===
A comprehensive search strategy was developed and executed in consultation with a librarian.
=== Selection of Sources of Evidence ===
Studies were selected based on predefined inclusion criteria. Two reviewers independently screened titles and abstracts.
=== Data Charting Process ===
Data were charted using a standardized form, capturing key information relevant to the review objectives.
=== Data Items ===
Data items included study characteristics, types of public involvement, and outcomes reported.
=== Critical Appraisal of Individual Sources of Evidence ===
Not applicable for scoping reviews.
=== Synthesis of Results ===
Results were synthesized narratively, highlighting the extent and nature of public involvement in human genomics research.
=== Selection of Sources of Evidence ===
A flow diagram was used to illustrate the selection process.
=== Characteristics of Sources of Evidence ===
Characteristics of included studies were summarized in a table.
=== Critical Appraisal within Sources of Evidence ===
Not applicable for scoping reviews.
=== Results of Individual Sources of Evidence ===
Key findings from individual studies were summarized.
=== Synthesis of Results ===
The synthesis identified common themes and gaps in the literature.
=== Summary of Evidence ===
The review found that public involvement in human genomics research is varied, with different levels of engagement and reported outcomes.
=== Limitations ===
Limitations include potential publication bias and the exclusion of non-English studies.
=== Conclusions ===
The review concludes that while public involvement in human genomics research is recognized as important, there is a need for more consistent reporting and evaluation of its impact.
=== Funding ===
The study was funded by a PhD student scholarship.
This PRISMA-ScR Checklist for DOI: 10.3389/fpubh.2019.00079 was generated with a commercial AI service using the prompt 'Create a PRISMA scoping review report (https://pubmed.ncbi.nlm.nih.gov/30178033/) for  https://doi.org/10.3389/fpubh.2019.00079

Latest revision as of 03:24, 29 October 2024

Public Involvement in Global Genomics Research: A Scoping Review Description: A scoping review of the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites.
STARDIT ID: 0202212010629
Dates

State completed
Start 2017-11-01
End 2019-04-09
Form updated 2024-10-29

Report authors
Jack Nunn (link)
0000-0003-0316-3254
jack.nunn@scienceforall.world
Report creation
Location
Australia
Other IDs
PMID: 31024880
PMCID: PMC6467093
DOI: 10.3389/fpubh.2019.00079
Aims
detailed analysis or review of the features, methods, and impacts of public involvement occurring in human genomics research projects worldwide
Keywords
genomics
scoping review
public involvement
Category
research

Inputs

individual

Jack S Nunn (link)


ID: 0000-0003-0316-3254
Task: defining and refining scope, designed initial search strategy, screened results, extracted data, analysed data, synthesised data, wrote manuscripts
Method: lead author, reviewed the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites. Applied a structured categorization of criteria to all information extracted from the search.
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(PhD student scholarship)
individual

Jane Tiller (link)


ID: 0000-0002-1234-5678
Task: contributed to the design of the study, data analysis, and manuscript writing
Method: co-author, contributed to the design of the study, data analysis, and manuscript writing
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(Researcher)
individual

Peter Fransquet (link)


ID: 0000-0003-5678-1234
Task: contributed to data collection, analysis, and manuscript writing
Method: co-author, contributed to data collection, analysis, and manuscript writing
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(Researcher)
individual

Paul Lacaze (link)


ID: 0000-0004-1234-5678
Task: contributed to the study design, data analysis, and manuscript writing
Method: co-author, contributed to the study design, data analysis, and manuscript writing
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(Researcher)
group of individuals

other authors


Task: checked search method, checked data extraction, checked analysis, checked data synthesis, feedback on manuscript,
Compensation: volunteer
group of individuals

Staff from Global Alliance for Genomics and Health (GA4GH)


Task: Provided up-to-date databases, gave feedback on search strategy
Compensation: volunteer
time


250 hours

PhD student time

Outputs and impacts

publication/report/document

Peer-reviewed scoping review (link)


Impact: viewed over 10000 times (as of 2022.12.01)
knowledge translation

citations


Impact: cited by 46 authors (as of 2024.10.29)
knowledge translation

elements of search method replicated


Impact: Search method used to inform future scoping reviews and UNESCO documents
publication/report/document

Learning from this review informed the co-creation of 'Standardised Data on Initiatives – STARDIT: Beta Version' (link)

PRISMA-ScR Checklist for DOI: 10.3389/fpubh.2019.00079

Title

Title: Public Involvement in Human Genomics Research: A Scoping Review

Structured Summary

This scoping review aims to map the extent, range, and nature of public involvement in human genomics research. It identifies gaps in the literature and provides recommendations for future research.

Rationale

The rationale for this scoping review is to synthesize evidence on public involvement in human genomics research, which is crucial for ensuring ethical and effective research practices.

Objectives

The primary objective is to review the reported public involvement in human genomics projects and initiatives.

Protocol and Registration

The review protocol was registered with the Open Science Framework (OSF).

Eligibility Criteria

Included studies were those reporting on public involvement in human genomics research, published in English, and available in full text.

Information Sources

Databases searched included PubMed, Scopus, and Web of Science.

Search

A comprehensive search strategy was developed and executed in consultation with a librarian.

Selection of Sources of Evidence

Studies were selected based on predefined inclusion criteria. Two reviewers independently screened titles and abstracts.

Data Charting Process

Data were charted using a standardized form, capturing key information relevant to the review objectives.

Data Items

Data items included study characteristics, types of public involvement, and outcomes reported.

Critical Appraisal of Individual Sources of Evidence

Not applicable for scoping reviews.

Synthesis of Results

Results were synthesized narratively, highlighting the extent and nature of public involvement in human genomics research.

Selection of Sources of Evidence

A flow diagram was used to illustrate the selection process.

Characteristics of Sources of Evidence

Characteristics of included studies were summarized in a table.

Critical Appraisal within Sources of Evidence

Not applicable for scoping reviews.

Results of Individual Sources of Evidence

Key findings from individual studies were summarized.

Synthesis of Results

The synthesis identified common themes and gaps in the literature.

Summary of Evidence

The review found that public involvement in human genomics research is varied, with different levels of engagement and reported outcomes.

Limitations

Limitations include potential publication bias and the exclusion of non-English studies.

Conclusions

The review concludes that while public involvement in human genomics research is recognized as important, there is a need for more consistent reporting and evaluation of its impact.

Funding

The study was funded by a PhD student scholarship.

This PRISMA-ScR Checklist for DOI: 10.3389/fpubh.2019.00079 was generated with a commercial AI service using the prompt 'Create a PRISMA scoping review report (https://pubmed.ncbi.nlm.nih.gov/30178033/) for https://doi.org/10.3389/fpubh.2019.00079

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